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Hello Greg, boy do I sympathise with your feelings. I'm 32 and was at first diagnosed with MS at 26. The following year I went to the Sahlgrenska University hospital i Gothenburg, Sweden, to join a research project. The doc in charge stared at me when I told him I was rockclimbing at the time. He pointed out several symptoms that were more typical for PD, for instance stiffness in stead of weakness of muscles. He noted dryly that with MS I wouldn't have come many feet off the ground. He put me on Madopar Quick mite 4x daily, and my symptoms just went away. Six years later, I've only experienced hallucinations once, due to being "oversensitive" to Cabaser. (I normally tend to under-medicate, hating the involntary movements intensely.) I didn't see things, but heard threatening voices instead. No fun at all, it took me two weeks in hospital to get my brain straight. Oh well... I'm still alive and kicking, thank God, although not always voluntarily (kicking, I mean. ;-) ) At the moment, life is quite good. I have a loving girlfriend, the same I had five years ago when I joined this group actually. Some of you might even remember my "panicky girlfriend" cry for help here. Well, she has stayed with me. :-) I'm working for a government agency, coordinating (you all know how tricky that is!) an Internet portal project, and I'm also responsible for the technical/programming part. Great fun, but maybe a bit too much stress at times. The best during the last month has been apomorhine: imagine waking up, and 10 minutes later you're out of bed! :-) (that is, you have the option to...) Greg, take care of yourself and keep writing! We are here for each other, novels or short stories. /John (32/26/18) PS. Pardon my at times faulty keyboard. ;-) I haven't installed my voice recognition software yet, erased the hard drive (on purpose) and reinstalled most stuff last weekend. ----- Original Message ----- From: "Greg Leeman" <[log in to unmask]> To: <> Sent: Saturday, March 24, 2001 7:29 AM Subject: Re: Advice needed > Dear Jen, > > I am a forty-year-old man who was diagnosed 10 years ago. Like many of the > stories told before this one, I went through quite a period of testing > before I received a confirmed diagnosis of PD. In that ten years I have > experienced the good, bad and ugly of this insidious disease. I am not > trying to scare you, but to be honest it can be rough at times. The secret > is to not let it get the best of you. That is, if you can. For me, some > times I have not been in control and that is as scary as it can get. > > I was born in a house my father built, just kidding. My first signs that > something serious was wrong became evident when I was rehabbing from > shoulder surgery in 1988. Through weeks of physical therapy I learned that > something was wrong with the right side of my body. Shakiness in my right > arm while doing rehab exercises was the first sign that the rehabilitation > was not progressing. However, it seemed to get worse as time went by. > Soon I was not able to write well and the natural arm swing on my right side > was disappearing. Then my right leg started to show a limp. Finally, the > PT asked me to see the orthopedist that had performed the surgery to see > what he thought of these unusual regressive symptoms from shoulder surgery. > > He looked at me for maybe 5 minutes and said, I want you to see a > neurologist tomorrow. As you could imagine terror entered my mind. He > said, "I am not going to sugar coat it, I think there is a neurological > problem. I am diagnosing it as "extrapyrimidal neuropathy. It could be one > of several things. Multiple Sclerosis, a brain tumor, Wilson's disease, or > Parkinson's disease all come to mind." > > The next day I went to the neurologist. She looked me over pretty good for > about two hours of prodding and pulling and stepping back and forth. When > she was finished she said, "you will have to go through a lot of testing to > confirm it, but I think you have Parkinson's disease. People will tell you > are too young and there are several disorders that mimic PD, but I am pretty > convinced that is what you have." I did not hear anther word that came out > of her mouth. > > My Dad followed me out the door and I told him I had to be tested for Aids > downstairs before we left. He said what! I explained that the doctor said > while I am here we can rule out a couple of things that mimic Parkinson's > disease. One is Aids at onset. The other was Wilson's disease, which I did > not know at the time was fatal. She also set up an MRI to rule out a brain > tumor. Pretty heavy possibilities to wander about all at once. > > Dejected, depressed and helpless are good descriptions of how I felt. I > felt so alone. My Mom had passed away from cancer in early 1990. We were > in the middle of the summer that same year. It was not my best year. This > as you could imagine added to my despair. > > From there I went to a neurologist closer to home in Portland, Maine. He > confirmed what the Portsmouth, NH neurologist had said about my age and > ruling out several more likely causes. He would concentrate on MS because > of my age. Testing for MS sucks. A spinal tap and an Evokes Potentials > test were on the list. The loss of spinal fluid from the brain used in > testing causes a three-day enormous migraine headache. In addition, in the > other test they pump electrical current through your feet. Both turned up > negative. > > Finally we decided to try some Sinemet to see if it made any difference in > my ability to move. It took a couple of weeks experimenting with different > doses, but, in the end it was like a cure. I regained my ability to move > and write. Everything that was taken was given back. I was elated. > > So for sometime, maybe about three years I was cured by this miracle drug > called Sinemet. I thought it would last forever. I was able to continue > working 70 hours a week in the stressful field of construction doing what I > had been doing for the previous year or two and even took on more because of > advancement. That is when things started to unravel a bit. > > First it was dyskinesias. Uncontrollable movement and painful posturing, two > of the awful side effects of overmedication on Sinemet. We started to add > adjunct medications, bromocriptine and eldepryl were the two we added. It > helped for maybe about six months then the dyskinesias returned. My doctor > was at a loss, so he sent me to see a movement disorder specialist in Boston > (who it turns out was a partner of MJ Fox's doctor at St. Elizabeth's > hospital) for help in controlling the side effects I was experiencing. > > He tried to lower my dosage. It worked well for about three months. On-off > phenomenon reared its ugly head. This is when your drugs go from working > well to not working at all as if someone turned a light switch off. As I > have said many times, this is the single toughest part of Parkinson's > disease that I have experienced. It makes each day a vicious cycle of highs > and lows. Mood swings I would characterize as manic or bi-polar. > > It went on like that for about two years. My symptoms would worsen and I > would up the dosages of the drugs I took. That is until the hallucinations > started. I thought there were insects and rodents infesting my bed. I had > several family members and friends all come over to my condo to get one of > them to confirm what I already knew. That there were bugs in my bed. Of > course, all of them tried to be nice and tell me that there was nothing > there in a nice way. > > For the next two years I would alter the amount of meds I took by how I felt > each day. Often I would either end up in a frozen state (unable to move) or > with severe dyskinesias that drained all my energy and hallucinations like > before only adding visual ones like snakes and wasps. During this my seventh > year I went to Australia with a friend to visit a friend who lived there. > On this trip I experienced many sleepless nights due to overmedication and > the paranoia and hallucinations they caused. I decided when I returned to > the states in a couple of weeks I would exhaust all options opened to me to > better my situation. After consulting with my neuro, family doctor and my > family, I decided to try a pallidotomy. (This is a brain surgery where they > lesion an area of the brain to offset hyperactivity in that region to > alleviate dyskinesias, rigidity and bradykinesia). > > I went to the neurosurgeon that had the most experience and best results in > New England, Dr. David Roberts of Dartmouth-Hitchcock Medical Center in > Hanover, NH. He was and is still renowned in his field. He is currently > the President of the American Neurosurgeon's Society. He interviewed me for > about one hour and said that although there is risk with any brain surgery, > I was in fact a perfect fit for pallidotomy. > > So my Dad and I went to a haven for People with Parkinson's disease who want > surgery (PWPDWWS) to improve their quality of life. After one of the > longest and most stressful nights of my life, I went to the hospital at 6am > on the morning of my surgery. The worst part of the surgery is the fitting > of the headgear which they adjust by putting plastic screw in your ears to > steady the stereotactic headgear while they line it up to screw it into the > 4 quadrants of your head. The pressure is intense and it lasted about 5 > minutes. Other stressful stuff like MRI's with headgear attached were easy > for me. I am not claustrophobic. > > All of it ended up being no sweat for the results I received. Again, it was > like a cure almost. The results were especially helpful in that it > eliminated my awful dyskinesias on my right side. So I was able to tolerate > more Sinemet although I needed less because my symptoms had improved. This > lasted two years until the symptoms on my other side had gotten severe > enough to have the other side done with the same improvement in the quality > of my life. > > The downside has returned since. I would as usual tend to be too liberal > with my medication. This caused a drug induced psychoses brought on by > overmedication. I ended up being charged with a felony that I have been > partly exonerated for. This is because two psychiatrists have said that the > incident was caused by a overmedication from Sinemet. That is my current > situation. > > I would like to tell you through all the ups and downs of my experience with > PD, I have been able to stay positive most of the time. But, when you have > to deal with the reality of possible incarceration, it is difficult to stay > upbeat. I am however, still trying to get on with my life. I hope no one > is offended by this honest (it seems as though I have written a novel, but I > could not stop) summation of my life with PD. I only hope it helps others > understand how screwed up you can get with overmedication. > > Thanks for listening, > > > Greg Leeman 40/30/28 > -----Original Message----- > From: Parkinson's Information Exchange Network > [mailto:[log in to unmask]]On Behalf Of Jennifer Post > Sent: Thursday, March 22, 2001 7:05 PM > To: [log in to unmask] > Subject: Advice needed > > Dear list members, > I just subscribed to this list and am posting a message without even > "lurking" for a while...so please forgive me if I am addressing an issue > that has already been discussed or if I am not following the group "norms." > My dad is 52 years old and just shared with me and my family that he has > been having trembling in his right hand and a "tired" feeling in his forearm > for about a year. He can control the trembling when he concentrates on his > movements but when he relaxes the trembling is pronounced. I immediately > thought of Parkinson's. He has seen his physician and is seeing a > neurologist next week. > Although he has not been diagnosed with Parkinson's at this point, I feel > compelled to be prepared for that. I am very worried and apprehensive mainly > because although I know some of the symptoms and treatments of Parkinson's, > I don't know how to anticipate how my dad will feel or what he will be > thinking if that is the diagnosis. I want to be able to support him, comfort > him, encourage him, etc. but feel at a loss because I cannot imagine what > he'll NEED. I was hoping that you all could share with me your insights into > how men his age feel and what they think when they are told they have > Parkinson's and what types of support, encouragement, etc. is and is NOT > useful from loved ones. > > Thanks so much for your help. > > Jen > -- > Doctoral Student/Evaluation Consultant > University of Pittsburgh > 741 LRDC > __________________________________________________________________ > Get your own FREE, personal Netscape Webmail account today at > http://webmail.netscape.com/ > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn